Many of my readers know that my oldest son, Jackson (17), has autism.
He is my son from my first marriage and he was diagnosed around the age of 3.
At roughly the same time, my father was dying from cancer.
It was a lot to take in at one time.
Jackson’s mom and I split when he was still an infant and she had the foresight back then, when things were still very rocky between us to remind me: No matter what’s going on between the two of us, we have to do all we can to make sure Jackson has all that he needs.
She was right. And that was well before he would get his diagnosis.
Which meant that her sentiments would carry even more weight and meaning moving forward.
Unlike a lot of people, I didn’t drown myself in information about autism. I didn’t want to read a lot. I wanted to read what would help me directly with my son. I asked for guidance from people who knew more than I did and our respective families, mine and his mother’s, banded together to make sure that Jackson wanted for nothing: he would be loved, he would be supported, he would be cared for and he would be respected.
Throughout Jackson’s life, but certainly when he was much younger, I think I heard every possible “cause” of autism:
-Vaccines (or a component of vaccines)
-Prenatal vitamins
-Environmental toxins
-The mother’s diet during pregnancy
-Exposure to microwave radiation
-Too many ultrasounds during pregnancy, etc.
And while any of those seem “plausible”, nothing has come up as proof.
Jackson is considered high functioning. If you didn’t know much about him and he wasn’t speaking or engaging directly with you, he looks like any other teenage boy.
His biggest challenges relate to having low verbal skills and comprehension.
He will likely never be able to hold a lengthy conversation with open-ended questions.
He will likely never drive a car.
And yet, he is happy, he is healthy, and by many accounts he is thriving.
There are individuals on the autism spectrum who function much higher than Jackson does. Some celebrities and famous individuals we know of who would qualify as being on the higher end of that spectrum include: Anthony Hopkins, Jerry Seinfeld, Albert Einstein, Daryl Hannah, and yes, even an individual who’s been in the public eye a lot lately, Elon Musk.
On the flipside, there are individuals who are considered low functioning or as having severe autism. They might be prone to violent outbursts, they might harm others or themselves, and they may be unable to perform activities of daily living without assistance.
As Jackson’s parents, it’s a thought that hangs in the background of: What will happen to him when we are no longer in this world?
From what’s visible now, it would appear that he could do well in some type of independent living scenario. While Jackson can be resistant to change and sometimes gets upset when schedules or situations don’t go as according to plan, he does show the ability to be flexible if someone is there to help explain what’s happening or changing.
I don’t know a great deal about what other autism parents experience.
Throughout the time I’ve had RevFit, I’ve had the privilege of working with several people who are on the spectrum to varying degrees. Some can hold conversations and follow exercise instructions with relative ease, some cannot.
Most always, I get the chance to talk with the parents to get at least a decent understanding of what living with their neurodivergent child looks like.
It reminds me that, just like being the parent of a child who is neurotypical (I have a 7-year old with my wife Marissa, named Sebastian, who fits this description) everyone has a different parenting experience.
So, while some commonalities exist: a preference for routine, a limited array of food choices, sensory challenges, etc. the adage in the autism community is: If you’ve met one person with autism, you’ve met one person with autism. That’s where it ends.
Which leads me to the inspiration for my post today.
Recently, Robert F. Kennedy Jr. made some troubling remarks about individuals with autism.
He is apparently concerned about the rate at which autism diagnoses are increasing.
He calls it an “epidemic.”
He states that autism is completely preventable and that we “know it is environmental exposure.”
In his recent press conference he stated: “Autism destroys families…These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date…and we have to recognize we are doing this to our children.”
My initial response was an emotional one.
No doubt, the “easy” thing for me to do is to attack the person.
But easy doesn’t make it right.
He stated elsewhere in the conference (I’m paraphrasing) that individuals with autism start off normal until about 2 years of age and then something changes.
There is the part of me that has a genuine curiosity: What if we ever found the “cure/cause” of autism?
And let’s assume for a moment that RFK Jr. is right when he says the blame is on environmental toxins.
An example of an environmental toxin might be something like heavy metals. Heavy metals can be found in trace amounts in soil, which can affect the plants we eat, they can be found in animals who live in the sea, they can also be found during the processing of our food.
So, yes, it’s “possible” that these heavy metals enter the bodies of our two year old children and something changes.
Of note, autism is far more prevalent in boys than it is in girls, and while the distribution is close between races, Blacks, Hispanics, Asian American/Pacific Islander boys appear to have higher rates of autism than White boys. I wonder why that is…
RFK Jr. claims he will have these answers for a cause of autism by September of this year. Of course, if (big IF, in my opinion), he is right, I can’t begin to imagine what will have to change in American soil, how we utilize pesticides, how we process foods and what type of waste doesn’t affect the fish in the sea.
I should also mention that it’s not just a problem in America. The increased rate of diagnoses appears to be relatively close in Japan, South Korea, Canada and Australia (not an exhaustive list).
Which makes me wonder as well…since each of those countries have different vaccine protocols, different soil, different food manufacturing practices, etc. are we still focused on environmental toxins or is it something else?
I am not an expert in autism. I don’t see myself as an expert in much of anything. I am someone who aligns with evidence-based scientific reason. Some parts of science I understand, some I don’t. I don’t mind being challenged if evidence leads in a place that doesn’t fit my current bias.
But long-term controlled studies of humans is expensive and difficult to implement which is why we can’t just corral a bunch of two year olds into a room, expose them to all sorts of “boogeymen” and see what sticks.
What I do find immensely upsetting is how RFK Jr made several blanket statements, many of which are grossly untrue (and potentially harmful) about a community of people who need support. My son being just one of them.
If you love someone with autism, what RFK Jr said “should” probably elicit an emotional response from you. If he’s right and he presents a clear cut cause of autism to America, I’ll give credit where it’s due.
I’m also not going to hold my breath.
I have a genuine curiosity about a lot of things and finding a “cause” of autism is something I’m truly curious about, just like I’m curious about finding a cure for cancer.
If RFK Jr. and staff come through, it may not change Jackson’s life, but it might change someone else’s.
Just like a cure for cancer may have come too late to save my father but it might save someone else.
It might be a tough pill to swallow, though, when as any responsible, caring, loving parent is just trying to do the very best to protect and improve the life of their child, if the evidence we’re presented with says: We know you tried your best, but you’re the reason your child has autism and you can’t blame genetics.
If you love someone with autism, love them fully. Love them completely. Even if it’s imperfect.
I can’t, in good conscience, say much of anything about Jackson without giving credit to the person who has arguably sacrificed more than anyone to give him what he has in life, his mother. She, along with her family and loved ones have provided a support system that my family is there to complement. He is who he is, primarily for the time, attention and care she’s given him and for that, I have been and will remain, grateful and thankful for.
If you’d like to read more about the topic beyond my son, this is a good place to start.
